New here, worried and confused!

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1
Hi. I'm new here. My OH, 49 yrs old, was diagnosed days before Xmas with a parkinsonism plus. Although he has been mobility impaired due to spinal surgery for a long time this has come as a shock. I must say google is not a good thing atm as I stupidly looked for information as the Dr's, nurses and consultant weren't exactly informative when I asked the differences between PD and a plus syndrome I've got myself in a tizz as it seems plus syndromes can have quite an effect on longevity and as his symptoms are progressing quite rapidly, or so it seems to me, I'm panicking. I can't find anyone who will explain things to me. I feel as if I'm not going to cope very well and I'm worried about the effects on our 5 year old daughter.
2

Contact the free confidential helpline on 0808 800 0303

Or contact your pd nurse. They will give you the support you need.

All the best

3
We saw the nurse on Wednesday but she seems not to want to give much information at the minute. It is the first time we've seen her since diagnosis. In one sentence she was suggesting 'getting things I order' like what my OH would want when/if he's unable to communicate etc as his symptoms are progressing quickly. Then in the next sentence saying without a scan they can't say which plus it is.....or indeed if it is......then backtracking to say he's likely to need a feeding peg in the not too distant future and that a scan won't tell them anymore than they already know. It seemed she was trying to say it isn't good then backtracking and playing it down. ....We both came out more confused than when we went in. My OH is adamant he won't have a feeding peg!
4

Hi there,

I'm sorry to hear that this is a difficult time for you. As Crystal suggested, please do give our Helpline team a call. They will be able to give you some more information and details of support that is available for you both. The Helpline 0808 800 0303 is open until 7pm this evening, and from 10am-2pm tomorrow.

Take care, and best wishes to both of you.

Joanne 

 

5
Hi. Thanks. Yes we're both having a hard time at the moment. OH won't speak about it at all so that's difficult too. I'm working this evening but will ring tomorrow if I can get some time where OH's not eavesdropping. Thanks again. I think I need someone to talk to as I feel overwhelmed.
6

I have a friend who's wife has been diagnosed with one of the conditions grouped together as Parkinsonism Plus.  There's more detail at

http://www.webmd.com/parkinsons-disease/tc/parkinson-plus-syndromes-topic-overview

 

There is less information about this as it is much rarer and the sooner an accurate diagnosis can be made of which specific condition is involved, the sooner you can both sit down and take stock of what control you can have and get the specialist support lined up.

K

 

One final point.  You are far far more than Justacarer, as are all the wonderful people that provide the support and motivation to help us carry on.